Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

Health Care From An 8th Grade Perspective


My children growing up, is both a blessing and a curse.  I want to hang on to the innocence that is their youth, totally unaware of the bad things going on in the world today, just eat, play, sleep.  But as they are both teenagers now, my role as a Dad has an increased value.  I am not just fun, but it turns out, I am pretty smart too, at least when it comes to something that will benefit them.

I have always been involved in my daughters education even before their first day in kindergarten.  Today, I am no longer a “teacher” in this position, but an “advisor,” being sought for advice, editing, information, and research.  This definitely comes in to play when it comes to any type of writing assignment.  My daughters know that I write, and when it comes to their “final drafts,” they want as close to perfection as they can get, which is when they come to me.

This particular writing assignment, for history class, was about the Affordable Care Act, the topic my daughter chose.  Though she did not give her reason for choosing the ACA, my daughter unfortunately has witnessed many events that resulted in my hospitalization.  So she is more than aware of the importance of health care in our lives, and in everyone else’s.  In fact, her interest in health care is so involved, that currently, that seems to be the direction she plans to take her future.  To say I am proud of her efforts is an understatement.  And just so the record is straight, I am proud of both of my daughters aspirations.

Her request of me was simple, help organize and edit her work.  She would do all of the research, including documentation of her sources, all while meeting the requirements for structure from the teacher.

I am trying to convince her to let me publish her essay here, not just as a proud father, but because after reading her rough draft, having done her research, and completing my obligation to her effort with editing, she has created a paper that is filled with facts, and more importantly keeps politics out of the charged subject that affects us grown ups on a daily basis.  She is still researching statistics to back up her thesis, so it is not ready to publish.  But when it is done, I challenge anyone to disagree with her compelling arguments.

As I said, she has done all of the research on her own about the ACA.  The only thing I offered her was a glimpse of what health care was like, prior to my adulthood, which honestly I had to research.  As I child, I never paid attention to doctor visits to see how they were dealt with from a cost perspective.  While my daughter may not completely understand all the factors that go into health care costs, she was shocked to hear that my mother actually paid $5 for me to see the doctor.  And if I needed medicine, my doctor kept all medicines in his office, costing only a few dollars.

I will warn you, my daughters both have an abundance of empathy, and so they both believe strongly, if someone needs help, the should get that help.  They believe this, because they believe people are good.  And good people do good things.  And so, right from the gate, my daughter states that affordable and available health care should be a right, not just something that people with money can afford.  Yes, I know, this sounds like a campaign talking point.  But at 14, my daughters is at least 4 years away from paying attention to politics.  Her statement is not a political one, it is what she truly believes a decent human being would want this for others.  I did not even need to whip out the Christian “it’s in the bible that we should take care of one another.”

After her initial statement, she explains why it was so important for the ACA to be signed, listing three reasons, availability, accessibility, and affordability.  And again, at no point, did politics come up.  She has kept her paper completely limited to the “human aspect.”  Her common sense confuses her that the issue of health care, even after decades, has still not been resolved.  She does not understand why many people cannot get the medical help that is needed, just because it is not available.  It makes no sense to her, that people who were sick in their past, would keep them from being taken care of today.  And finally, she is saddened to realize that people can die, because they cannot afford their medicines.

Again, no mention of politics in her writing.  She is currently on working on backing up her statements with research, not talking points.  I mentioned to her how proud I was of her work and research.  And I also told her how spot on she was with what she had stated.  I told her how important it was that she stuck to what she wrote, without injecting one-sided political arguments and flat out misrepresentations, because this is what has stood in the way of achieving affordable, available, and accessible health care.

To prove to her just how right she was, I discussed with her, and showed her other posts and columns that I had written pertaining to my support of universal health care.  I make no bones about it, I believe in universal health care as a right.  And I do believe that if we took the politics out of the discussion, we might just achieve that level of health care.

I then explained to my daughter the many conversations I have with others, and with one simple rule, you allow and respect the other to have their opinion.  With that being in agreement, I really believe that you can have an intelligent debate on just what needs to be done, and can be done.

Prescriptions are just one example of health care out of control, and leading to the worst of circumstances.  I explained to my daughter the concept of rationing medications like insulin, and the consequences that can occur from that action, including death.  Again, common sense, trying to understand why a drug that has remained the same for decades, costs 1200% more than what it did originally.  And even more confusing, why that same drug is way less expensive in other countries.

My daughter understands some people are born sick.  She also knows that some people’s health are affected by unexpected events such as car accidents.  And then there are those, like me, whose health issues were created by health care for other health events.  In 1988, I was treated for Hodgkin’s Lymphoma with radiation and chemotherapies.  My daughter obviously was not around 30 years ago when this happened, but she has been witness to the many issues that I deal with today, cardiac, pulmonary, skeletal, gastrointestinal and more, all caused by late developing side effects from my treatments.  What she cannot understand is, if anyone is in need of health care, it would be me, and others in a similar situation.  How could I be turned away just because I was sick before.?

The truth is, universal health care does work.  And it has worked for decades.  What does not work under universal health care, is profit and greed.  My daughter easily has figured out that we are one of the few countries that profits off of its sick.  The look of disappointment on her face says it all.  I explained to her, that many simply do not want universal health care, for either misinformed, or selfish reasons.

The term universal infers “socialism,” a bad political term going back to the 1950’s and 1960’s under leaders such as Marx.  Socialism is often feared as being one step away from Communism.  And perhaps it could be.  But the truth is, we actually accept “socialism” with some items such as the fire department, police department, paramedics, libraries, and more.  So why then would the most important benefit to our lives, health care, not be accepted?  If you are against socialism, does that mean that you want to turn back the services of the fire department and other emergency services?  Of course not.

What I have found, and again, I insist if you are going to debate health care with me, leave politics out of the discussion, and stick to facts, and we can come up with not only a solution, but the real crux of the problem of universal health care itself, beyond the money-making profit machine of Big Pharm and Insurance.

“I don’t want to pay for someone else’s health care.”  Politics and lobbying aside, this is the main argument against universal health care, not whether it works or not, not whether there are problems or not, but rather an individual position.

Again, at one point, getting medical care was easy and affordable.  But in the 1980’s, entitlement issues in politics caused a fissure in compassion that we used to have for each other as human beings, if you force me to throw out the Christian card, I will.  Rapidly, we began to judge those and their circumstances that caused people and/or their families to be unemployed, for any reason.  In simpler terms, these people are not putting anything into the system that they would benefit from with universal health care, and there are those who do not like that.  Of course then, I would bring up the other socialism programs like emergency services, that a person with no job should have their house burn down if they do not work or some other emergency, and I am looked at as if I said something absurd.  But for some reason, when it comes to health care, there is a line drawn in the sand.  No job, “you do not deserve health care at my expense.”  And even if it would save money for the working contributor, in other words, instead of paying $12,000 per year (or more) to an insurance company, having a tax take out $2000 per year, saving this person $10,000 per year, those who oppose universal health care stand by their principle, willing to pay the higher amount, just so that someone does not get something for “free.”

It took no time for my daughter to soon realize, health care discussions were a lot more complicated than the thesis she had chosen to write about.  But she still stands by what she writes, that health care should be a right.  No one should be turned away.  Everyone should have access to the best care available.  And if you have been previously sick, you need the health care even more.  Not paying attention to the political discourse, she is only aware that the ACA is in jeopardy of being turned back 100%.  And since she has researched what it was like before the ACA, she can only shake her head that we are going back to the beginning of the argument, and people will die while the process starts over, if at all.

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When A Picture Is All That Is Left


“I don’t think I have ever seen a customer get so many pictures developed so often.”  The was a comment by a cashier at my local CVS over ten years ago, as she handed me a pack of more than 300 pictures that I had just had developed (printed) from a recent trip or event.  And to be fair to the cashier, this was actually a regular occurrence.

Gone were the days of just using a Kodak instamatic, or a Poloroid, and ending up with either 12 or 24 prints.  Digital cameras allowed us to take many more photos and save them.  And today, you can actually take and store thousands of pictures on your phones.

In recent months, I worked on a personal project for each of my daughters.  There was no particular reason I chose to do this, but being a sentimentalist, to say I enjoyed looking back through thousands of photos, is definitely an understatement.

But it was during my recent post about my father, that I reminded myself again, just as I did more than fifteen years ago, that I renew the conscious effort to make sure there are memories not just for me, but for my daughters as well, of the important people in their lives.

In my personal photo collection, I have less than a dozen photos from my childhood with either of my parents.  In my adult life, I did a little better with pictures with my parents.  My maternal grandmother, someone I consider one of the most influencial  people of my life, the photo that I posted yesterday was the only photo of the two of us together, and I have only one other photo of her, with her sister.  Other family members as well, it is the same, one or two photos, maybe a half dozen at best.  And with many of those relatives having passed away, these photos literally are all that I have left.

One thing that I promised to do better, was to make sure that my daughters had plenty of memories to look at.  And it is not just for their benefit, but mine as well.  I spend a lot of my time, day after day, looking back at all the fun things that we had done throughout their short lives already.

I have done my best to document their earliest days, and much to their chagrin as teenagers, I have not eased up on the amount of photos I take.  I make sure that there are photos with grandparents, cousins, friends, everyone who has been a part of their lives.

And what is just as important to them, us, is that even though there was a time when my body was not in the current health situation that it is in right now, struggling with the late effects from my cancer treatments, my daughters can remember the times that we shared, but as they see current photos, though our activities with each other are within my abilities to function, the smiles are still the same.  We still have tons of fun.  And you can see that.

Ten, twenty years from now, there are no shortage of photos to look back upon.  We have had a great time so far, and there are plenty of days ahead, and a lot more photos to take.  But one thing is clear, of all things that matter to me most, is being a Dad.  Some day they are going to go off to college.  Some day they are going to go off on their own.  And I am going to need these pictures, until I get the chance to take some more.

5 Years Later… I Still Miss My Dad


For those of you, too young to recognize the photo above, the is a disc of vinyl on what was called a turntable.  The arm placed on the vinyl, had a “needle” or stylus that produced music, before there was MP3’s, digital downloads, and even CD’s (hopefully you know what those are, though as I understand they are being phased out now too).  In any case, I spent so much time listening to music this way.  I took care of my records.  No scratches, a common problem for vinyl, that could impact the quality of the sound, as well as the ability to play the music.

You see, over time, a condition might often occur, where the needle would get stuck on the record at a certain spot, and as the record continued to turn around, it would just repeat that same groove on the vinyl, over and over.  We referred to this as a “broken record.”

In life, there are many things that we face, that often get us stuck in that kind of rut, unable to get on to the rest of the record.  Metaphor aside, at least I used to be able to, just buy a replacement album if I wanted to do so.  And normally, I do not hold on to something for so long, because of that rut.  But there is one thing I have not been able to move forward on.

The loss of my father, now approaching five years.

It just has not gotten any easier.  But it is not for the reason that you think.  I have written before about my inability to grieve properly, not something I would describe as a character flaw, but rather a defense mechanism.  A mechanism I have carried most of my life, a way to protect myself.  But protect myself from what?

I have often discussed the three chapters of the life that I had with my father, a split childhood between married parents and then divorced parents, estranged for a majority of my later childhood from my father, but the second half of my life, moving on from all the hurt, rebuilding what we lost, having a relationship with someone that I considered one of the strongest people in my life.

We had a lot to mend with each other.  Things had been said.  Things had been done.  And were it not for a major medical crisis, we may never have turned that corner.  That event opened a door to discuss guilt, give explanations, offer support, and ask for help.  We began talking again.  He learned a lot about what I had gone through with my Hodgkin’s Lymphoma.  And when his health took a turn, with a major heart attack, it soon became my turn to help him with his needs.  And then as late effects from my treatments became obvious, he was there for me, something that he had not done in the past.  We were moving forward finally.

My dad had many grandchildren, but for the purpose of this story, my daughters gave him the opportunity to do what he did not do for me in my childhood.  And he loved all of his grandchildren.

Approximately seven years ago, my father informed me that his doctor had seen spots on his lungs, which would lead to an early diagnosis of emphasema.  At this point, the doctor considered it reversible, even for someone who had been smoking for over five decades.    Though he would try to quit, with various means, he was unable.  But during a follow up exam, it was now felt that my dad had developed lung cancer.  I have written more in detail about that in past posts, so I will spare the details now.

My father had asked me, to accompany him to appointments.  This made sense to him because of my history.  He knew that I would understand things being said, and be able to explain to him if he did not understand.  I would also be able to ask questions that my father might not think of.  I was also very likely to remember most if not all of my father’s medical history.  I was touched by what my father had asked of me.  Estranged for as long as we were, my stepbrother would have been the more logical choice, and I would have understood that.  But this is what my father had wanted.

But as time went on, it soon became apparent that my father was going to need more than a companion or caregiver.

As the cancer became more serious, my father realized that he needed to have decisions made in advance, in the event that he would not be able to make them himself.  At this point, again with no objections from me, my father appointed my stepbrother as his legal rep, but asked me to take on the role of his health care proxy.  In other words, should something happen that he would no longer be able to make his own rational decisions, I would be trusted to carry out my father’s wishes.  If there is one thing that my father knew about me, getting back to that character quirk that I have, disconnecting emotionally, my father knew he could count on me to follow his wishes, no matter what.

At this point, conversations between my dad and I had become dominated by his issues.  I no longer spoke of things that I was dealing with myself.  I had a lot on my plate.  I was campaigning for school board (my second campaign), my own health had been giving me difficulties from my late side effect issues, and my marriage was failing.  But I was not going to allow my dad to feel I was being overwhelmed with his issues.  I knew that I could do what my dad wanted and needed.

But in February of 2014, my father was informed that his cancer was now terminal.  My role as his health proxy was going to change from that of advocate and support, to adding comfort as his cancer would rapidly progress.

Now anyone who has ever been a health care proxy, knows this is not an easy thing to do.  Emotions must be shut down, logic must take over.  You must also balance your needs with the task of caring for someone else.

The first pressing issue faced by my stepbrother and I, was trying to keep together what had not been apart in over four decades, our parents.  My stepmother needing her own level of a different care, my father his own care, did not qualify to be kept together in the same home due to a technicality in his supplemental health insurance.  Needless to say, together, we did get them together, and a lot of funny stories.  More importantly, they were together when he passed.

But something happened during the hospice process that appears to have changed everything for the rest of us involved in this process.  And the honest reason is I do not know why.  I had followed my father’s wishes.  And even up to my father’s memorial service, everything seemed as if we would just move forward.  But as I mentioned in the beginning of this post, this “needle” seems to be stuck.

I do know that there were decisions that were made by me, that other family members disagreed with.  And again, my father trusted me to make those decisions.  One of those decisions was protecting his privacy from anyone who might try to interfere with his care.  And I totally get it when someone is dying, you want to do all you can, everything, to cure them.  But, there are limits to that, and this is where my logic took over, and actually got quite firm.

As anyone facing a death sentence from cancer, of course, you are willing to try anything, and that includes clinical trials.  These are treatments that might have hope.  And at the time that my father was dying, there was such a drug that had showed promise as a possible treatment for advance stage lung cancer.  But what I could not convince anyone of, the difficulty of qualifying for clinical trials.  Forget the fact there is no guarantee of cure, but time was quickly running out.  But even that would not have disqualified him.  But the fact that my father had experienced so many health issues over the recent years, and during his cancer diagnosis, HE WOULD NEVER HAVE QUALIFIED FOR THE CLINICAL TRIAL.  Sure, we could have fought for him, but I knew we were never going to see any victory, and all that would happen would be to have lost the last moments with my father.

But as his health deteriorated further and rapidly, so did his mental status.  And this would cause a lot of issues among all of us, because there were times that my father was so convincingly lucid, though in reality he was not, arguments over his care and handling often resulted in conflict.  It soon became a battle with just giving a dying man whatever he wanted regardless if it was good for him or not, or if it was at the expense of the care he was given.  He was dying, just let him enjoy his last days.  Which honestly, as his son, I would not have had any problem with.  But that was not what my father asked of me.

I was a monster for not allowing my father to eat sugar candy snacks and drink caffeinated drinks because that would keep him awake at night, often giving the minimal night staff problems with behavioral issues.  Rather than risk my father being ignored or worse, restrained, I restricted the things that would keep him awake at night.  No matter the pleas, “he’s dying just let him have what he wants,” that did not result in my giving him back his cigarettes to enjoy.  He had been restricted to the nursing home eventually, but that did not stop some from wanting to take him offsite for some last outdoor enjoyment.  Again, this was not possible procedurally, just another source of growing conflict.  And then of course, there was the huge disagreement of care of a hospice patient, who is dying.  Treatments and medicines are no longer given.  As Hospice is not about extending life, which would only end up being more painful, it is about making the end of days as comfortable as possible.  And that is what my father expected me to do.

As I mentioned, I had my share of things I was dealing with as well.  But many of my nights were spent with my father at the hospital and nursing home, days at work, and squeezing in my medical appointments.  And with a pending court order coming in my divorce, I had other pressing decisions to make as well, all as my father lay dying.

Again, I never asked for understanding.  I had been trusted by my father to honor his wishes, and I did just that.

My stepbrother has my father’s ashes, again, which I had no issue with.  The plans as far as I knew, were that eventually my stepmother’s ashes would eventually be combined with my father.  Again, not something I objected to.

But something happened after that memorial service that I just do not have any answers to, and why that “needle” just continues to skip.  And for that reason, I cannot grieve for my father, now approaching five years later.   Like I said, I get that there are many that did not agree with the decisions that were made, and I can accept that.  But there is more going on than anyone is letting on.  But, as communications have basically been cut off from the majority, I will never know what changed after my father’s memorial service that I have been cut off from nearly everyone, and for no reason.

Sad really, even my children understand something is not right.  My younger daughter has even offered to request some of my father’s ashes for me to have as I have been cut off from contact, for no reason, or at least none given.  While I appreciate her gesture, her being a child is not going to help it get done, though both my daughters are really confused as to why the animosity.  And I am just as confused myself.  I have not had any communication with anyone in the nearly five years since.  I have made attempts, but no response.  Evidently even acknowledging and offering sympathies for other losses are not acceptable as a temporary halt to whatever is at issue.

And so, another year passes.  Dad, I do miss you so.  And I know this is not the way that you intended things to turn out.  That is not who you were.  I know that.  Because of our relationship, the second half of our life was able to become what it was.

Below is the link to a story that I wrote, and was performed on stage, sponsored by Memorial Sloan Kettering Cancer Center, the tribute I wrote for my father.

 

And to those family members, I really do not know what I did that changed things after my father died.  And since none of you will explain to me, I guess it is what is.  It does not change my relationship with my father, or my relationship with my daughters and their grandfather.  But the door is still open.

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